Is It Worth It?
"Does she really want to live in her present totally paralyzed situation?"
A family member said that several people have asked that question when asking about me.
ALS is an unrelenting, tortuous, terrible disease. I can feel everything, but can't move anything except a few muscles on my face. I definitely have hard moments and days when I'm discouraged and I wonder if I can go on living in a body that doesn't work. But to help you understand my response to the question above I'll describe two different scenarios or contrasts in my world with ALS.
1) Recently we invited guests for lunch and Kevin came to get me up in my wheelchair. Simple.. Right? Not! He has to fully support me when he swings my feet around, sits me on the side of the bed and lifts me around to the chair. Sometimes when getting me up everything feels off and uncomfortable probably because I have no muscle tone and my skin is looser. For example, the skin on my back may be stretched up at an uncomfortable angle, my hips too far back causing an arch in my torso, or my headrest too far forward so my chin is resting awkwardly on my trach, and so on. When I try to give Kevin instructions how to adjust me, the movement throws something else off and the cycle repeats. How hard can it be to get up in the chair?! After many tears and fighting the temptation to just give up and have him put me back to bed we finally make it to the table, when everyone is almost done eating. Sometimes it takes 15 minutes to get me comfortable again after something as "simple" as pulling me up in bed! Is it even worth it?
2) But, let me describe another possible hour in my day. I see a little blonde head go past the end of my bed as my 16-month-old grandson, Josiah, toddles into my room. He comes to my side of the bed, looks up at me and jabbers something. His momma leans over to kiss me and then picks up Josiah and puts him on the bed beside me. He usually immediately lays his head down on my chest, giving me a "hug," sometimes several of these hugs in a row. Sitting with me a few minutes, my daughter explains to him that he needs to be careful not to pull my trach tube because that's the way I breathe. Cocking his head slightly, he says something unintelligible, points at my trach and reaches out tentatively to touch it. Later he snuggles against me drinking his bottle while he distractedly lifts my hand up and down. He seems to have some level of understanding that something is different about his Grammie but nonetheless we share a close bond. I wouldn't trade these special moments with him for anything!
I have many scenarios (some good, some questionable) similar to the two I described that cycle through my days. Many times it's not butterflies and sunshine. Some may debate whether or not they think I have quality of life.
It's a crazy, inconvenient, different sort of life than I would've chosen, but nonetheless it's still a good life. Here's some reasons why I believe this: I'm still TOTALLY ME on the inside. I still have the same personality, active mind, goals and dreams. I still share the same memories with my family and laugh at the same jokes. My bedroom has become the main hang out place for the whole family and guests. I still have some level of wisdom and advice to share with my kids. I can still be involved in planning things. I have much to look forward to with upcoming celebrations such as graduations, births, weddings, and family reunions. I can still connect with God and find enjoyment in reaching out and being a blessing to others. Aren't those still the things in life that are MOST important?!
As I look at the pictures and memories since ALS I realize that the positive experiences and memories far outweigh the difficult ones. (see YouTube short "Goodbye 2024" to see a few recent photos…https://youtube.com/shorts/8DrQu1PPn44?si=GUUkM7O65VCFtydr) Usually the hard moments pass. Even after a bad night the sun rises the next day. Much of our contentment in life has to do with our focus and perspective. Even though your life may not be ideal or picture-perfect I encourage you to make the choice to love life and pursue peace. "Whoever desires to love life and see good days... Let him seek peace and pursue it." 1 Peter 2:10.
It's worth it.
Shelly, God has given you such inner strength. He will make all things beautiful in His time and He has made you beautiful now! Your surrender, trust and confidence are an inspiration to me and give me confidence that If I ever found myself in a situation like yours He will do the same for me! I cherish all the memories of times spent together and look forward to the day when this trial will be lifted from you and you will run and not grow weary!! The BEST is yet to come!! I Love you!!
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